Community-building leads to record enrollment in HIV prevention study

Fighting the stigma of HIV among communities of color takes trust — and time

August 4, 2017•By Mary Engel / Fred Hutch News Service

Keith Richardson, left, a recently hired community engagement coordinator for the Vanderbilt HIV Vaccine Program in Nashville, Tennessee, calls community engagement manager Vic Sorrell, right, his mentor and "one of the most passionate people I've ever met." They made the rounds at Nashville's Gay Pride festival in June with Latifa DaSilva, center, an administrative assistant at Vanderbilt.Photo courtesy of Katie Jennings / New Canoe Media

NASHVILLE, Tenn. — An hour and a half into a rousing Sunday service at the Kingdom Love Worship Center, the Rev. San Jackson paused her preaching to ask Vic Sorrell if he wanted to say a few words.

Sorrell didn’t hesitate. Bounding from his back pew to the pulpit, the white visitor stood before a congregation of African-Americans, their faces politely expectant behind a blur of hand-held fans.

As community engagement manager at the Vanderbilt HIV Vaccine Program, Sorrell gives talks like this many times. But even 36 years into the pandemic, HIV can make for a difficult conversation, one the 39-year-old Sorrell tailors to the audience and the moment, speaking from his heart and trusting he’ll strike the right chord.

“Thank you for being a congregation that says, ‘Come and talk to us,’” he began that June afternoon in East Nashville. “Every one of us is either infected or affected by HIV. The virus knows no color, no socioeconomic status.”

To calls of “Yes!” and “Amen,” Sorrell spoke about an international research study called AMP — for Antibody Mediated Protection — underway at the Vanderbilt University Medical Center and other sites around the world. Run by the HIV Vaccine Trials Network, which is headquartered at Fred Hutchinson Cancer Research Center, the AMP HIV Prevention Study is enrolling 4,200 volunteers to test an experimental antibody that could potentially protect people from infection by HIV.

The antibody is modeled on one that developed naturally in a person whose immune system had been able to control his HIV infection for years without needing medication, Sorrell explained. Such rare individuals are intensely studied by scientists.

“There’s a chance a vaccine could be created that could cause that antibody response in other people and keep them from getting infected if they are exposed,” he said. “If we had a vaccine, we could truly begin to see the face of HIV changed. Thank you for being willing to support these efforts. Thank you for being the faces of love and community we need.”

Vic Sorrell talks to the congregation of Kingdom Love Worship Center in East Nashville about about the AMP HIV Prevention Study.Photo courtesy of Katie Jennings / New Canoe Media

As the organ started up again and Sorrell headed back to his pew, Jackson, the pastor, nodded her approval.

“Vic preached,” she said. “You will hear some people say that HIV was God’s curse. Whatever the problem, Jesus sends an answer.”

Just maybe, she seemed willing to consider, this antibody could be that answer.

That strong response is in no small part due to the efforts of community outreach specialists like Sorrell. Their job is to engage interest and build trust in a clinical trial that is among the largest and most complex either of the two vaccine networks has ever conducted. And in few communities is gaining trust more important than among African-Americans.

Sorrell is right that a virus knows no color or socioeconomic status. But because of many of the same barriers that contribute to health disparities in cancers and other diseases, HIV hits African-Americans harder than any other group of Americans. As with whites, black men who have sex with men bear the brunt of the infections. If current infection rates continue, according to the U.S. Centers for Disease Control and Prevention, one in two gay or bisexual African-American men will be diagnosed with HIV in their lifetime.

Let that sink in: one in two.

Geographically, a majority of these new infections will occur in the South, which today has the highest HIV diagnosis rates, the largest number of people living with HIV, and the highest death rates with HIV as an underlying cause in the U.S. Fueling those figures is a lack of access to quality health care due to poverty, no or inadequate health insurance, and cultural attitudes and beliefs that contribute to distrust of the medical system.

For many minority populations, distrust stems from decades of neglect and even exploitation. The Tuskegee experiment is the most infamous example for African-Americans. Starting in 1932, scientists followed hundreds of black sharecroppers for 40 years to study the long-term effects of syphilis without ever telling the men they were infected or offering them treatment once penicillin proved curative.

Dr. Greg Wilson, lead scientist for the AMP study at VanderbiltPhoto courtesy of Katie Jennings / New Canoe Media

Fighting stigma

Another equally daunting barrier is unique to HIV, according to Dr. Greg Wilson, the AMP study’s lead scientist at the Vanderbilt site.

“It’s the stigma still associated with HIV — not wanting individuals in your family to know you’re positive, not having a circle of friends you can talk to,” he said. “Family and church are large issues for African-Americans. You may know that you need to go to a doctor to determine if you have HIV, but there’s a lot of baggage that’s associated with that knowledge and consequences that may come with other people knowing about it — rejection, not only from family but from your church community, which may be your major source of support.”

Barbara Gunn Lartey, the director of community engagement for the Nashville Human Relations Commission and a longtime advocate for people with HIV, agrees that stigma and fear make HIV a taboo topic in many African-American households.

“You still have families who require you to eat on paper plates at Thanksgiving,” Lartey said.

The stigma and shame go deeper than fear of infection.

“For people of color in particular, it’s an issue of your salvation,” she said. “You have voices from the pulpit saying that HIV is punishment for whatever — for being gay, for being promiscuous, for using drugs, for participating in risky behavior. In many cases, the pastor’s perspective can outweigh a parent’s. You feel like you’re being condemned to hell.”

Which brings us back to why Vic Sorrell was at a small African-American church in East Nashville on a Sunday afternoon talking about the AMP study. How he got there is a longer story.

Music City dreams

Sorrell’s path to the pulpit of HIV outreach was not a straight one. He was nicknamed “Baby Country” when he moved to Nashville at age 17 from a small town in Virginia, determined to be a country music star. The cherubic-faced crooner had been performing on stage since he was 6. He had wanted to be Dolly Parton for at least that long — OK, maybe not to be Dolly herself, but to have her talent, her light, her presence.

He enrolled in Nashville’s Belmont University and got a degree in music management and marketing for his parents’ sake. But he also got a band and was well on his way to signing a recording contract when something happened that upended his dream: He fell in love with a man.

The surprise was how unequivocal it felt. There were no longer doubts, no telling himself it was a phase he would outgrow. And it forced a decision.

“The reality of the conservative nature of the country music industry smacked me in the face, and it was made very clear that I needed to decide what I wanted,” Sorrell said. “Did I want to be gay, or did I want to be a country star? For me, being something in the public eye that was not real and was not true was not an option.”

And just like that, the dream he had held since he was 6 disappeared.

He stayed in the music business by working in marketing but spiraled into a personal crisis. He found his way out through Marianne Williamson’s best-selling books on spirituality and decided: “I want my gifts to serve, and I’m willing to have that happen however the opportunities present themselves.”

In the 2008 Great Recession, his fallback marketing job disappeared, but a new opportunity presented itself. A friend who knew his drive to do good mentioned a job opening for an HIV prevention educator at Nashville Cares, the largest HIV services agency in the region.

As a gay man, Sorrell definitely had HIV on his radar, but he had no idea that such a job existed, much less that he could do it. He got an interview. Then he got the job.

Sorrell said the work — by which he means the people he’s met and the partnerships he’s formed at Nashville Cares and later at the Vanderbilt HIV Vaccine Program — has made him who he is today. And who he is today, many argue, is a big part of why the Nashville AMP study is shaping up so successfully.

Barbara Gunn Lartey, director of community engagement for the Nashville Human Relations Commission, says of Sorrell, "He gets that, at the heart of it, it's about a person's humanity."Photo courtesy of Katie Jennings / New Canoe Media

‘Two peas in an odd-shaped pod’

One of his earliest partners was Lartey, who at the time was a case manager and director of women’s programs at Nashville Cares. Lartey’s and Sorrell’s backgrounds could not have been more different.

Lartey grew up in the shadow of Tuskegee. Its legacy was not so much talked about as modeled. Observing her aunts and other elders, Lartey recalled that “your head had to be pretty much hanging off to go to a doctor.”

She first became aware of HIV as a Peace Corps volunteer in West Africa and later when she studied law in South Africa. She was shocked at the widespread misinformation: The virus was believed to have been created by the U.S.; the use of condoms was seen as a ploy to control African population growth. She was shocked again to return home and see the fear, stigma and misinformation surrounding HIV in her own community.

Lartey acknowledges that she and Sorrell are “two very different peas in an odd-shaped pod.” But the two clicked right away.

“It gets my attention when someone says, ‘I don’t have all the answers, but I’m open and willing to learn.’ And that is Vic Sorrell,” said Lartey. “He gets that, at the heart of it, it’s about a person’s humanity. We believe in each other. We believe in this work of lifting up humanity.”

Vic Sorrell, left, at Nashville's Gay Pride festival in June with a key partner, T.K. Hampton, a performer and HIV advocate.Photo courtesy of Katie Jennings / New Canoe Media

After Sorrell moved to the Vanderbilt HIV unit, he continued working with Lartey to set up programs for Black HIV Awareness Day at African-American churches in Nashville. Earlier this year, he joined her in a musical production about HIV prevention. The musical was written by another key partner, T.K. Hampton, a longtime HIV advocate who works for a Nashville program called Street Works that supports African-American gay and bisexual men. (The show, “YOU Shall LHiV 2 Zero,” was so successful that the group has been invited to present it at the United States Conference on AIDS in Washington, D.C., in September and at the annual Conference on Retroviruses and Opportunistic Infections, or CROI, in Boston next March.)

The only white person in the musical, Sorrell contributes a country version of the title song, talks about the AMP study — and speaks forthrightly about the institutional racism that has contributed to the high rates of HIV among African-Americans. He also describes hard-won lessons on recognizing privileges he never even realized he had.

“When you get up in the morning and the first thing you think of is not the color of your skin, that’s a privilege,” he said during a recent run of the play. “Being given the opportunity to check my privilege is one of the greatest gifts I’ve ever gotten.”

‘I’m going to hate when the study is over’

AMP is an ambitious study with an ambitious goal. Each HIV-negative volunteer gets randomly assigned to receive a laboratory-produced version of the antibody Sorrell described that day at the church service or a placebo via an intravenous infusion. If the antibody provides protection against HIV as hoped, information gleaned from the study could help scientists make a vaccine that teaches the body to make such antibodies — long the holy grail of HIV researchers. A vaccine is widely considered the nail in the coffin needed to finally end a pandemic that still causes 40,000 to 50,000 new infections in the United States each year and 1.8 million worldwide.

In the beginning, the study’s organizers feared that the time commitment alone — participants receive a total of 10 30- to 45-minute infusions, one every eight weeks — would discourage volunteers. That has not been the case.

Justin Lofton, a peer navigator at My House in Nashville and a volunteer in the AMP StudyKatie Jennings / New Canoe Media

Take Justin Lofton, 25, who works at a Nashville drop-in center for young gay and bisexual African-Americans called My House and who also performs in Hampton’s musical. Lofton volunteered for the study because he believes that such research is key to protecting his community.

“I work with HIV-negative men right now,” he said. “Sometimes I’ll be thinking, ‘Now we’re all negative, but if I count out one, two, one, two, one, two — half of us could get infected with HIV.”

But what keeps him coming back for the infusions are Sorrell and the rest of the study staff.

“They are invested in making us feel like more than a number,” he said. “They’re there outside the clinical role. To me, that feels like a relationship.”

Darnell Peppers, 23, agrees. He met Sorrell at a Nu Phi Zeta party — a non-university affiliated, service-oriented African-American fraternity — and took to him instantly. The fraternity’s motto is “I am my brother’s keeper,” and after reading more about the AMP study online, Peppers started asking himself, “How can I help?” He decided to volunteer for the study.

Thanks to Sorrell and the staff at the Vanderbilt program, Peppers said, “I really feel cared for. I’m going to hate when the study is over.”

So along with enrollment rates that are exceeding expectations has come another surprise: In Nashville, 33 percent of those enrolled are people of color, a higher percentage than any previous study the Vanderbilt HIV program has done.

Sorrell lays this success on the key community partnerships that he has formed with Lartey, Hampton, Lofton and others. His talent for building these partnerships has earned him a reputation throughout the HVTN as a pioneer in community engagement.

“Vic can’t be surpassed in his ability to connect to people,” said Kyle Rybczyk, the Vanderbilt program’s clinic coordinator, who hired Sorrell. “We have a solid reputation in the community for being a program that cares, that’s visible, that shows up — not just when we need people but when they need us.”

As a white man working with communities of color, Sorrell has learned it’s the showing up part that counts. The way to break down barriers is as simple as it is challenging: Open your heart. Be fully present. Repeat.

“My experience has been that even if at first there is a hesitancy to my being there, people eventually understand that my commitment is to however I can assist with what they’re already doing,” he said. “How I can provide resources or any kind of support. Once people have experienced that again and again, a trust is established and I find that there really aren’t barriers to my being there. But it takes time.”

Being a community outreach specialist is not a 9-to-5 job. Evenings, weekends, hot Sunday afternoons in a small church, Sorrell will be there. Again. And again. And again.

Mary Engel is a former staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.

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